In September of 2007 Taylor shared her story with the Women’s Hair Loss Project. She has now written to share her update with us.
——————-
As of June 08 I began to be able to stand and walk, after beginning a new treatment that was made available to treat the nerve damage I had in my legs and back from my accident. Now, almost a year later I’m up as if nothing ever had gone wrong. I’m still getting a hang of the whole running thing though, it’s quite the sight. All my health issues completely disappeared, but alopecia decided to come back and pay me a visit.
My hair began to fall out in late November, just before I graduated from college. At first it was just a little more then usual when I was washing my hair. I reasoned that it was because I hadn’t brushed it for a few days so all the hair that fell out naturally had not yet been removed. It became more and more noticeable until there was just no convincing myself that I wasn’t relapsing. I was devastated because I felt that for once my life had been going right, and for the first time in so long I had the opportunity to just be a normal girl and fit in with everyone else. I felt like I was being punished, as ridiculous as it may sound.
One night in the early hours of the morning I came back to the Women’s Hair Loss Project to read what I wrote about my first experience with Alopecia. I felt like a hypocrite, talking about how inner beauty matters the most and there I was falling to pieces because I was losing my hair again. But I had to laugh at how much times had changed since re-reading what I wrote (especially about my ex!). This time around I was very lucky to have such a good support system; my amazing friends Jess and Matt who were there to pick me up off the floor and knock some sense into me. I really don’t know what I would’ve done without them. The biggest lesson I’ve learnt since Alopecia’s… graceful return is that what makes us different, makes us beautiful. Our hardships in life really define who we are as a person, and without them we wouldn’t learn and we wouldn’t grow. Alopecia makes me look unique, which is something I’ve come to embrace. I know so many people who look and act like clones, being a carbon copy of someone else would be a nightmare to me. [click to continue…]
The other day I was surfing the internet and stumbled across an advertisement for the OOKISA hair products. The advertisement stated it regrows hair, so of course I had to immediately inspect it. I quickly clicked on to the link and was taken to the OOKISA website. I was greeted by the little cartoon above, which I have to admit, is super cute. In fact it actually is a little animation, and her hair goes from short to long on a loop. I want to preface this post by saying I am not trying to attack the product, but I have some serious issues with the claims they are making on their website. I have no issue with the hair volumizing, extra shine claims, I definitely think that is possible with a really nice shampoo, but hair growth?
Their website states the following, “In addition, these ingredients improved hair flexibility, enhanced moisture retention and stimulated key factors involved with the growth of new hair. This resulted in an overall youthful appearance to hair.”
What are the key factors? I searched the product list and found a:
“Fortifying Shampoo” which the company states “powerfully cleanses and removes polluting and clogging substances that damage hair and keep you from achieving optimum hair thickness.” Contrary to what some may believe, clogged pores do not cause hair loss. Having said, that it is nice to be squeaky clean, so okay I’ll bite, and say this may be a nice quality shampoo for having clean hair.
They also offer a “Replenishing Conditioner” which states “moisturizes hair and is lightweight,” big plus for thin hair gals, but still haven’t seem the active growing agent.
I spot a “Instant Volumizing Souffle” which I admit sounds quite tantalizing to my follicles. Do I put it on my head or eat it? I love soufflé! [click to continue…]
I never really stop to think how much effort I put into trying NOT to think about my hair loss and how exhausting not thinking about my hair loss actually is.
I avoid mirrors, strong overhead restaurant lighting, I turn the bathroom lights off before going in (in my house). I’d do it in public to if I didn’t think I’d get tons of grumbles and nasty comments from the women already in there. Ha! Unless they had hair loss, then they’d give me a high five. Typically when I need light I use softer lights that are sort of dimmed.
Up in the morning, early 5:00am start to the day. I shower and I comb my hair quickly trying to get past the torture. Shower is always fun pulling the hair out of all sorts of odd places including my deriere. Oops stuck between my fingers, rinse it off, rinse it off or paste it on the bathroom wall. Always fun to look at after. Comb, scoop, comb, scoop, hair into the toilet. I pull my hair back in a ponytail or up in a clip to avoid feeling the hair fall all day. However, (as thin hair ladies know) the clip can hurt since it sits so close to the scalp with none of that pesky “hair padding,” it can become quite itchy and bothersome, so I loosen it up to make sure it’s perfect and set for the day. Oops now my hair looks flat on the left side. Do it again…oops now it’s flat on the right. Oh my gosh I look like a 
human ice cream cone, with no hair on the sides and a little on the top, the shape of my head has me looking like a Mister Softee. Do it again, darn it now my gaping center part is shining for all the world to see. Hummm I don’t remember it being that thin before. Maybe I should use the blow dryer some more. Blow to the left, blow it to the right. Apply clip strategy again, ah this “style” is okay. My simple clip style takes longer than it looks, same for the ponytail. This hair over that hair, brush here, brush there, trying to maximize every strand. Volumizing shampoo, volumizing conditioner, volumizing spray, volumizing mousse, plump this plump that. Poof it’s still flat. Part my hair one millimeter to the left of its normal part, nope, one millimeter to the right, yes that’s just perfect. Now I can begin my day. I glance at my watch, I wonder what activities are left to do on this Saturday at 10pm.
Happy Sunday Ladies! [click to continue…]
I got up this morning, walked the dog, came home, fed the dog. Threw on some workout clothes and hopped down to the gym (garage). I put my earphones on, I turn the ipod on, and I started the treadmill. The first song queued up is one of my favorites, and it just puts my mind at such ease and makes me smile. The song only lasts three minutes and thirty five seconds, but that’s enough. Enough to put my mind in the right mood and enough to set my day up with possibility. I of course played the song over and over since I wanted to draw out as much serenity as possible 🙂 I jogged along and felt content and… dare I say… happy. Sure my hair is falling out, it fell in the sink, it fell in my coffee, stuck to my sweatshirt, but I was happy. In that moment I felt right.
I think we need to take more time for ourselves, to do the things we enjoy and remind ourselves of living. It’s way to easy to obsess about our hair loss and worry about the future, but in doing so, we so frequently miss out on today, the beauty around us, the beauty within.
So now I know you are dying to know what song I was listening to. Well here it is for your listening pleasure (just click on the play button below) and your three minutes of freedom:
“Put Your Records On” By Corinne Bailey Rae – Best 0.99 cents I ever spent on iTunes!
[audio:https://www.womenshairlossproject.com/wp-content/uploads/2009/03/happysong.mp3]
Wishing you all a beautiful and HAPPY Friday!
Enjoy life, enjoy freedom, enjoy being you.
A blog from the network, written by Bonnie.
Well, this was intended be a simple little blog about asking you all to sign a petition asking Bayer, the manufacturer of Mirena, to fully disclose the side effects of Mirena to potential patients. But in checking back to the Mirena website to make sure I accurately used their wording concerning hair loss, I have now found that instead of just burying it as an “uncommon side effect, affecting less than 5% of users,” they have now removed it all together. I am so outraged that I am literally shaking! I am almost in tears. When I initially figured out that the Mirena was what was causing my hair loss, I found on their website that it listed “hair loss” as an uncommon side effect (though I do not feel that something affecting up to 1 in 20 users should be considered “uncommon”). In January, they updated their site to read “changes in normal hair growth cycles.” And now, the only place that you can find anything listed on their site about hair loss is under the Physician Information tab. It lists Alopecia as an uncommon side effect. “Alopecia is NOT listed in the Patient Information or Safety Information section at all. It simply says, “for a complete list of side effects, please contact your health care provider.” The pamphlet I was given did not list hair loss, alopecia or changes in normal hair growth cycles. How in the world are women supposed to get accurate information?
I had a Mirena for 11 months beginning in 11/07. Without even going into the horror story of how it was inserted, I basically bled for almost 11 months straight, and was told this was “normal” and that it would eventually stop. I noticed significant hair loss in August 2008 and was diagnosed with a very low ferritin level (I guess that’s what happens when you bleed literally all of the time!). I did mention the Mirena to my GP but she did not think it was a factor. I started taking iron supplements, as well as many other vitamins, but my hair loss just continued and I became very depressed. My hair loss got worse and worse and I just could not figure out what was causing it. I was literally always the healthiest person I knew. [click to continue…]
by Rebecca on March 1, 2009
This beautiful story of inspiration, strength and understanding was written by Becca, a member of The Women’s Hair Loss Project Network.
Yesterday started like one of those days that you don’t even want to get out of bed for me. Tuesday, my 2 year old and I both had the stomach flu, so between her vomiting anything that went in and me having a mind numbing headache, we survived. My husband decided that he would take the day off yesterday to help us recooperate and maybe do the five loads of vomit laundry that we accumulated. I had to get my normal bloodwork done, I have it done every two weeks because of my hypothyroidism, so we had to find a lab that would accept my new insurance. I had some bad experiences in the past with waiting in the lobby of these places, till they actually forgot I was there and turned out all the lights. I didn’t want another experience like that, especially being sicker than I normally am.
I reluctantly put on a wig, it was colder here so no bald head outside, and we left the house. Once we got to the labcorp building I just wanted to go home and lay in bed with a bucket. After registering with what I thought was just a receptionist, she informed me she does the whole shebang, registery, bloodwork, and follow-up. While she was entering all my new information, she turned around and said, “Ya know, I was just diagnosed with what you are getting bloodwork for.” I laughed a little and said good luck! Here is a woman in her early 50’s, very put together, almost looking defeated when I said that. I realized how it came across and I explained to her that what I have is a very rare form of the disease and all my symptoms are extremely heightened. She asked me about some of the symptoms, like my hands and feet fall asleep, my joints ache, exhaustion constantly, etc. And then she mentioned hair loss. I’m not one to get embarrassed, so I just told her, “Yeah, mine is so bad, I shaved my head a few weeks ago.” She just looked at me and then told me that she too, is having hair loss in quarter sized patches and it scares her. I thought of all you ladies immediately!! I could see in her face this look of upsetedness and sympathy. I knew what I had to do for her and the hairlossproject. I told her how devastating it was for me at first and how I found support with you ladies. I told her how I cried all the time at first and really felt alone. I told her that acceptance will come, no matter what happens with her hair. [click to continue…]
I would like to share with you a story written by a woman named Melba who has been with The Women’s Hair Loss Project since last October. Before I share her story, I’d like to talk a little about hair transplants and my thoughts on women being candidates for this procedure. I have written in the past that I am not particularly a fan of hair transplantation in women. The reason for this being the common diffuse pattern of hair loss prevalent among many women who experience thinning hair. I am not a physician and everything I write is simply my opinion based on my own hair loss and that of all the images I have seen published by the members of The Women’s Hair Loss Project Network, along with the many stories I have received from women who had less than favorable outcomes from hair restoration surgery.
In a hair transplant procedure a strip of hair is removed from the back of the head and the follicles are implanted into the thinning areas. For men this usually works out great because the area in the back of the head is usually DHT resistant, which is why even in the baldest male, he will usually maintain that rim of hair around the bottom portion of his scalp. In many women with female pattern hair loss, the hair falls from all over the scalp in a more diffuse pattern. I say pattern, but it is really a lack of pattern, it is just from here and there and everywhere. For myself I lose hair from the top, both sides and also the back of the head (top and bottom) and my hair has fallen this way for the last 9 years. So I know I make a very poor candidate for a hair transplant procedure since any hair moved could potentially just fall out the next day. Many of the 1400+ members of The Women’s Hair Loss Project Network have the same type of hair loss as myself, so it seems this is more the norm for female androgenetic alopecia than an occasional occurence.
Having said all that, I have to ask, how can a woman with diffuse female pattern hair loss be a candidate for surgical hair restoration? I simply cannot wrap my mind around that, yet there are some physicans who believe that hair transplantation is a viable option for women with this type of hair loss. [click to continue…]
Mary discusses living with alopecia, and how attending a Bald Girls Do Lunch event dramatically changed her life. Read Mary’s full story here.
by Y on November 21, 2008
Hi everyone –
As I am sure everyone is already aware, the Internet can be such a wretched place for men and women who are searching for answers for their hair loss. When I started losing my hair 9 years ago, the online resource options were pretty slim, but what made it worse to me was that the available online forums seemed so depressing, confusing and darn right ugly at times. People fighting and no direction really sent me more into a downward spiral, of course so did everything else. 🙂 This is why I wrote a post last September 10th explaining my thoughts and opinions on online forums in general, and why I had chosen not to include one on this site. I have sort of softened up my opinions on online message boards since that time and understand now the value it can have for some individuals. I realize that if forums are cultivated in a respectful, professional and loving manner that they can be a huge value to people.
A new forum has recently been launched by the founder of The American Hair Loss Association. The forum titled Bald Truth Talk http://www.baldtruthtalk.com is aimed to create a safe platform for men and women to get real information and support without the confusing junk that often times infiltrates online message boards. To read an article about this new resource visit: http://www.thebaldtruth.com/news/baldtruthtalk-new-hair-loss-forum/
I am proud to be a part of this new online support message forum. I am already a member over there and will being doing my best to represent women with hair loss, and to share information and guidance the best I can. I want to make sure that women everywhere suffering with hair loss knows they are not alone. The only thing worse than losing your hair at 21 years old, is to be losing your hair AND thinking you are the only one. [click to continue…]
by Y on November 19, 2008
Dear Hair,
I am so mad at you, and hurt by you for what you have done to me. I sit here in my pajamas and robe, crying uncontrollably from your selfish desire to leave. Have you no consideration for me? For my life , for my sanity? For 21 years you deceived me, tricked me into a false sense of security thinking you would be with me for life. What did I ever do to you? Was it lack of appreciation?
Now for 9 years you let me try to do different things to win you back. I gave you all sorts of things…. I even prayed for you and meditated for you! And what do you do? You tease me. You stay for awhile then run away. Stay, then run away. Now you’ve almost taken all of your things and left. What am I left with? An emptiness and wonder for what I will do without you.
How did I ever depend on you so much? You logically seem so insignificant, yes I SAID it, insignificant! What do you do? You just sit there, waiting to be tended to and pampered. I have other things more precious than you. Health, Sight, Hearing, Legs, Arms, and Heart. I know you’ve made up your mind already, and that there is nothing left I can give you to stay. So I guess I should work on moving on as well. But… if you want to stay, I’ll gladly take you back! So let me know at the next shampoo, k? 🙂
Yours Truly,
Mind, Body, & Soul
